19th NOVEMBER 2016 MEDIA RELEASECROP THE MOP - BUZZ THE FUZZ

Think globally. Act locally. The Global Lyme and Invisible Illness Organisation (GLiIO) is a not-for profit association raising awareness of Lyme Borreliosis and other Vector Borne Illness around the world. This November sees the introduction of their Southern hemisphere Spring fund-raising and awareness campaign - Crop the Mop / Buzz the Fuzz.

Crop the Mop – Buzz the Fuzz will become a yearly campaign, with the concept following on from similar lines in which the Northern Hemisphere Lyme community joined forces to raise awareness of the dangers of ticks and the pathogens they carry in May, which is their last month of Spring. Similarly, this campaign will raise awareness in time for summer in the Southern Hemisphere, and aims to educate the wider community that ticks become more active in summer time, and to be aware of the health issues that may follow after a tick bite.

The date of November 30th 2016 was chosen to launch the inaugural campaign as it is a significant one in Australia this year. On this date the final report of the Australian Government Senate Inquiry regarding the ‘Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patients’ is due to be released.

“We are hoping that the only thing being swept away on November 30th is hair, and not the need for funding and research into this Vector Borne Illness that is debilitating thousands of people in Australia and around the world.” Crop the Mop organiser Karen Smith said.

On November 30th 2016, GLilO founders Karen Smith (Australia) and Lisa Hilton (USA) will launch the inaugural campaign by each 'cropping' approximately 40cm of their long tresses. Once cropped, they will be donating their hair for wigs. Lisa's hair is going to a Cancer organisation in America and Karen's hair will be sent to an Alopecia organisation in Australia.

While the added bonus in this Inaugural campaign is that both founders of GLiIO have hair long enough to be able to donate for wig making, the primary aims of Crop the Mop are to raise awareness of Lyme & Vector Borne Illness; raise funds for projects that GLiIO undertakes; and to help people raise funds for patient care / treatment.

The Lyme community was asked to join in helping make the campaign a success by either, sharing the campaign and spreading awareness, cropping their own mop, or donating funds.

Having no hair to ‘crop’, Australian Lyme patient, Nurk Daddo, added the ‘Buzz the Fuzz’ component to the campaign, “For any blokes that want to get involved, where, like myself, cranial hirsuteness may be an issue, I've come up with Buzz the Fuzz - I'm going to join in by shaving off my beard - facial fuzz that has been my friend for 40 years”, he said.

“For our inaugural 2016 ‘Crop’ we decided to aim high and set a GLilO fundraising goal of $5,000 Australian” said Lisa and Karen. “We also wanted to initiate what we feel is a unique campaign idea, in that not only are people able to help by raising funds for the projects GLiIO undertakes, they are also able to raise funds for themselves, or another person in need.”

For example, half the funds raised by Nurk’s ‘Buzz the Fuzz’, will go to Natalie Young (a fellow Parks and Wildlife worker and Lyme patient), with the other half going to GLiIO for projects, such as Red Shoe Day: A Day of Remembrance for all those lost to Lyme & Invisible Illness, Holiday Seasons Wish-list and the Global May Project which raises awareness and connects patients around the world.

“Being involved with the Lyme community for a number of years, we are very aware of the fact that many people struggle with treatment and everyday living costs. We wanted to be able to give back to the people in the community who are constantly raising awareness and helping others, by offering a way to raise some extra funds of their own. Funds raised may go towards the costs of treatment, which is expensive no matter what country you live in, or something simple to raise spirits, such as a pampering session in a Day Spa, which is generally beyond the reach of many patients” Lisa and Karen said.

Videos will be taken of each ‘Crop the Mop’ and ‘Buzz the Fuzz’ and shared on Global Lyme & Invisible Illness Facebook Page.

The Global Lyme and Invisible Illness Community will be wearing Red Shoes and sharing their pictures and memories of friends and loved ones lost for the third year this July 25th~ Red Shoe Day: A Day of Remembrance.

Red Shoe Day was founded by Global Lyme and Invisible Illness Organisation (GLilo) in memory of Australian Lyme Patient, Theda Myint. The Inaugural Red Shoe Day was held on the 25th July 2014, and the day has quickly become established as an annual Remembrance Day to remember not only Theda, but all those lost to Lyme and other invisible illnesses – such as ME/CFS - around the world.

In the broad sense of the term, invisible illnesses are those that are generally ‘invisible’, not only from the outward appearance of the person, but also seemingly invisible to appropriate research, treatment and care of the thousands of people that are living with them. Many living with these illnesses are also ‘invisible’ to society, as their health is such that they are confined to their houses (and many to their beds) for months, even years.

As well as wearing their Red Shoes (or red socks, red ribbons, or lighting candles) and sharing the pictures online, people are also encouraged to share memories of those lost. “The day is not only to remember those that have passed, it is also to celebrate their lives, and to share the wonderful memories their time on this earth gave us”, Karen Smith, Australian based co-founder of GLiIO said.

In the last two years, over a thousand people, from countries around the world - including Australia, United States, United Kingdom, Ireland, Belgium, Germany, Sweden, Mexico – have supported Red Shoe Day by wearing their Red Shoes and sharing pictures, memories and artistic tributes online, with some also coming together for social gatherings to share memories.

During the Inaugural Red Shoe Day Dianne Rae shared a David Eagleman quote: “There are three deaths. The first is when the body ceases to function. The second is when the body is consigned to the grave. The third is that moment, sometime in the future, when your name is spoken for the last time.” Karen notes that the Eagleman quote captured the essence of what Red Shoe Day is about, and GLiIO have since used the quote each year to spread awareness and promote the message, “May we all prolong the last and final death of friends and loved ones by always speaking their name”.

Lisa Hilton, American based co-founder of GLiIO said, “Red Shoe Day is very important for many reasons, including giving the families and friends of loved ones lost a chance to come together again, and to know that their loved ones lives, as well as their fight for recognition, will always be remembered by many around the world”. Lisa also hopes that Red Shoe Day can help bring to light the fact that, “while many people pass from complications of Lyme and Invisible Illness, many more lives are lost due to suicide. The lack of understanding, science and research into these conditions by some in the medical profession leave countless people living with these illnesses the feeling that there is no hope of regaining their health. This situation needs to change, and quickly”.

Carol Adams, Theda Myint’s Mum, and carer for 14 years writes: "Red Shoe Day means so much to me as one of her [Theda's] ambitions is still being fought for and she is remembered. Theda wanted to let the public know about Lyme. To bring it out in the open, how it destroyed lives and that those with it were treated very badly by the medical profession and by our government. Every time she was interviewed for a TV program she suffered repercussions but it was her only way of letting the world know what was happening to so many. I was very proud of who she was. Loved her, of course. But liked and admired her as a human being, loved her company, all these things are a bonus to a parent.

Every time someone posts about Theda, remembers her, helps me as she is still fighting and has made a difference and is still making a difference. I miss her with every breath I take and the pain is a physical ache in my chest that never goes away."

Global Lyme & Invisible Illness Organisation invites everyone to join them again this July 25th to remember those lives lost, and to share any memories or messages they may have with others. Whether that is a personal memory of an individual passed or a message of understanding and solidarity for friends, family and all those still fighting on for their health and awareness.